Skip to main content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Journal of Child and Family Studies 2/2015

01-02-2015 | Original Paper

Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Auteurs: Rocco Luigi Picci, Francesco Oliva, Federica Trivelli, Claudio Carezana, Marco Zuffranieri, Luca Ostacoli, Pier Maria Furlan, Roberto Lala

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 2/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Rare diseases are chronic and sometimes life-threatening conditions which differ from others due to less definite identity and more difficult clinical management. These peculiar features may hinder the parental adaptational process. The study aimed to compare the emotional burden and coping strategies of parents of children with rare diseases (CRD) with those of parents of children with chronic diseases (CCD). Quality of life, anxiety, depression, and mood states of 55 parents of CRD and of 56 parents of CCD were assessed by specific validated assessment tools. Parametric and non-parametric tests were used for multiple comparisons. Bivariate correlations were employed to explore the relationship between coping and emotional burden. Parents of CRD were more anxious, more confused–bewildered, and less active–vigorous than those of CCD (p < 0.001). Parents of CCD preferentially used some problem-focused and emotion-focused strategies (active coping, seeking instrumental social support, and positive reinterpretation and growth), whereas parents of CRD more often turned to religious coping (p < 0.001). The indefinite and uncertain identity of rare diseases hindered the adaptational process and appeared to impede the use of active coping, seeking instrumental social support, and positive reinterpretation and growth, that was correlated to higher level of vigor–activity among parents of CCD (p < 0.001). Conversely, the falling back on religious coping by parents of CRD didn’t result in improvement of any burden features. The main findings of the present study seem to suggest that both parents of CRD and those of CCD achieved good overall adaptation 1 year after child’s illness diagnosis, but they did so in different ways, showing slightly differences in emotional burden, probably due to the lack of available medical knowledge about diagnosis, prognosis and treatment of rare diseases. Therefore these findings stress the relevance of physician training and of providing information in the field of rare diseases.
Literatuur
go back to reference Adams-Greenly, M. (1986). Psychological staging of pediatric cancer patients and their families. Cancer, 58(2 Suppl), 449–453. PubMedCrossRef Adams-Greenly, M. (1986). Psychological staging of pediatric cancer patients and their families. Cancer, 58(2 Suppl), 449–453. PubMedCrossRef
go back to reference Brewer, H. M., Eatough, V., Smith, J. A., Stanley, C. A., Glendinning, N. W., & Quarrell, O. W. J. (2008). The impact of Juvenile Huntington’s Disease on the family: The case of a rare childhood condition. Journal of health psychology, 13(1), 5–16. doi: 10.​1177/​1359105307084307​. PubMedCrossRef Brewer, H. M., Eatough, V., Smith, J. A., Stanley, C. A., Glendinning, N. W., & Quarrell, O. W. J. (2008). The impact of Juvenile Huntington’s Disease on the family: The case of a rare childhood condition. Journal of health psychology, 13(1), 5–16. doi: 10.​1177/​1359105307084307​. PubMedCrossRef
go back to reference Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283. PubMedCrossRef Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283. PubMedCrossRef
go back to reference Christ, A. E., & Flomenhaft, K. (1982). Dis-synchrony of coping among children with cancer, their families, and the treating staff. In Psychosocial family interventions in chronic pediatric illness. New York, NY: Plenum Press. Christ, A. E., & Flomenhaft, K. (1982). Dis-synchrony of coping among children with cancer, their families, and the treating staff. In Psychosocial family interventions in chronic pediatric illness. New York, NY: Plenum Press.
go back to reference Clarke, N. E., McCarthy, M. C., Downie, P., Ashley, D. M., & Anderson, V. A. (2009). Gender differences in the psychosocial experience of parents of children with cancer: A review of the literature. Psycho-oncology, 18(9), 907–915. doi: 10.​1002/​pon.​1515. PubMedCrossRef Clarke, N. E., McCarthy, M. C., Downie, P., Ashley, D. M., & Anderson, V. A. (2009). Gender differences in the psychosocial experience of parents of children with cancer: A review of the literature. Psycho-oncology, 18(9), 907–915. doi: 10.​1002/​pon.​1515. PubMedCrossRef
go back to reference Conti, L. (2000). Repertorio delle scale di valutazione in psichiatria. Firenze, Italy: SEE. Conti, L. (2000). Repertorio delle scale di valutazione in psichiatria. Firenze, Italy: SEE.
go back to reference Di Fabio, A., & Ghizzani, F. (2006). Satisfaction With Life Scale (SWLF) versione italiana. Counseling. Giornale Italiano di Ricerca e Applicazioni. Di Fabio, A., & Ghizzani, F. (2006). Satisfaction With Life Scale (SWLF) versione italiana. Counseling. Giornale Italiano di Ricerca e Applicazioni.
go back to reference Farnè, M., Sebellico, A., Gnugnoli, D., & Corallo, A. (1991). POMS: Profile of Mood States. Manuale Adattamento Italiano (Italian Manual). Firenze, Italy: O.S. Organizzazioni Speciali. Farnè, M., Sebellico, A., Gnugnoli, D., & Corallo, A. (1991). POMS: Profile of Mood States. Manuale Adattamento Italiano (Italian Manual). Firenze, Italy: O.S. Organizzazioni Speciali.
go back to reference Fife, B., Norton, J., & Groom, G. (1987). The family’s adaptation to childhood leukemia. Social science & medicine (1982), 24(2), 159–168. Fife, B., Norton, J., & Groom, G. (1987). The family’s adaptation to childhood leukemia. Social science & medicine (1982), 24(2), 159–168.
go back to reference Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life. Psycho-oncology, 10(4), 325–335. PubMedCrossRef Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life. Psycho-oncology, 10(4), 325–335. PubMedCrossRef
go back to reference Grootenhuis, M. A., & Last, B. F. (1997). Adjustment and coping by parents of children with cancer: a review of the literature. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer, 5(6), 466–484. CrossRef Grootenhuis, M. A., & Last, B. F. (1997). Adjustment and coping by parents of children with cancer: a review of the literature. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer, 5(6), 466–484. CrossRef
go back to reference Hamilton, M. (1959). The assessment of anxiety states by rating. The British journal of medical psychology, 32(1), 50–55. PubMedCrossRef Hamilton, M. (1959). The assessment of anxiety states by rating. The British journal of medical psychology, 32(1), 50–55. PubMedCrossRef
go back to reference Hamilton, M. (1980). Rating depressive patients. The Journal of clinical psychiatry, 41(12), 21–24. PubMed Hamilton, M. (1980). Rating depressive patients. The Journal of clinical psychiatry, 41(12), 21–24. PubMed
go back to reference Koch, U., Härter, M., Jakob, U., & Siegrist, B. (1996). Parental reactions to cancer in their children. In L. Baider, C. L. Cooper, & A. Kaplan (a c. Di), Cancer and the family. Oxford, England: Wiley. Koch, U., Härter, M., Jakob, U., & Siegrist, B. (1996). Parental reactions to cancer in their children. In L. Baider, C. L. Cooper, & A. Kaplan (a c. Di), Cancer and the family. Oxford, England: Wiley.
go back to reference Kupst, M. J., Natta, M. B., Richardson, C. C., Schulman, J. L., Lavigne, J. V., & Das, L. (1995). Family coping with pediatric leukemia: Ten years after treatment. Journal of Pediatric Psychology, 20(5), 601–617. PubMedCrossRef Kupst, M. J., Natta, M. B., Richardson, C. C., Schulman, J. L., Lavigne, J. V., & Das, L. (1995). Family coping with pediatric leukemia: Ten years after treatment. Journal of Pediatric Psychology, 20(5), 601–617. PubMedCrossRef
go back to reference Lammens, C. R. M., Bleiker, E. M. A., Verhoef, S., Ausems, M. G. E. M., Majoor-Krakauer, D., Sijmons, R. H., et al. (2011). Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes. Psycho-oncology, 20(6), 631–638. doi: 10.​1002/​pon.​1951. PubMedCrossRef Lammens, C. R. M., Bleiker, E. M. A., Verhoef, S., Ausems, M. G. E. M., Majoor-Krakauer, D., Sijmons, R. H., et al. (2011). Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes. Psycho-oncology, 20(6), 631–638. doi: 10.​1002/​pon.​1951. PubMedCrossRef
go back to reference Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY, US: Springer Publishing Company. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY, US: Springer Publishing Company.
go back to reference Leventhal, H., Diefenbach, M., & Leventhal, E. A. (1992). Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cognitive Therapy and Research, 16(2), 143–163. doi: 10.​1007/​BF01173486. CrossRef Leventhal, H., Diefenbach, M., & Leventhal, E. A. (1992). Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cognitive Therapy and Research, 16(2), 143–163. doi: 10.​1007/​BF01173486. CrossRef
go back to reference Magni, G., Carli, M., De Leo, D., Tshilolo, M., & Zanesco, L. (1986). Longitudinal evaluations of psychological distress in parents of children with malignancies. Acta paediatrica Scandinavica, 75(2), 283–288. PubMedCrossRef Magni, G., Carli, M., De Leo, D., Tshilolo, M., & Zanesco, L. (1986). Longitudinal evaluations of psychological distress in parents of children with malignancies. Acta paediatrica Scandinavica, 75(2), 283–288. PubMedCrossRef
go back to reference McNair, D. M., Lorr, N., & Droppleman, L. F. (1981). Manual for the profile of mood states. San Diego, CA: Education and Industrial Testing Service. McNair, D. M., Lorr, N., & Droppleman, L. F. (1981). Manual for the profile of mood states. San Diego, CA: Education and Industrial Testing Service.
go back to reference Nooney, J., & Woodrum, E. (2002). Religious coping and church-based social support as predictors of mental health outcomes: Testing a conceptual model. Journal for the Scientific Study of Religion, 41(2), 359–368. doi: 10.​1111/​1468-5906.​00122. CrossRef Nooney, J., & Woodrum, E. (2002). Religious coping and church-based social support as predictors of mental health outcomes: Testing a conceptual model. Journal for the Scientific Study of Religion, 41(2), 359–368. doi: 10.​1111/​1468-5906.​00122. CrossRef
go back to reference Pargament, K. I. (2001). The psychology of religion and coping: Theory, research, practice. New York, NY: Guilford Press. Pargament, K. I. (2001). The psychology of religion and coping: Theory, research, practice. New York, NY: Guilford Press.
go back to reference Pargament, K. I., Smith, B. W., Koenig, H. G., & Perez, L. (1998). Patterns of positive and negative religious coping with major life stressors. Journal for the Scientific Study of Religion, 37(4), 710–724. doi: 10.​2307/​1388152. CrossRef Pargament, K. I., Smith, B. W., Koenig, H. G., & Perez, L. (1998). Patterns of positive and negative religious coping with major life stressors. Journal for the Scientific Study of Religion, 37(4), 710–724. doi: 10.​2307/​1388152. CrossRef
go back to reference Sawyer, M., Crettenden, A., & Toogood, I. (1986). Psychological adjustment of families of children and adolescents treated for leukemia. The American Journal of Pediatric Hematology/Oncology, 8(3), 200–207. PubMedCrossRef Sawyer, M., Crettenden, A., & Toogood, I. (1986). Psychological adjustment of families of children and adolescents treated for leukemia. The American Journal of Pediatric Hematology/Oncology, 8(3), 200–207. PubMedCrossRef
go back to reference Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997a). Coping Orientation to Problems Experienced (COPE): Traduzione e adattamento italiano. [Coping Orientation to Problems Experienced (COPE): Italian translation and adaptation.]. Bollettino di Psicologia Applicata, 223, 25–34. Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997a). Coping Orientation to Problems Experienced (COPE): Traduzione e adattamento italiano. [Coping Orientation to Problems Experienced (COPE): Italian translation and adaptation.]. Bollettino di Psicologia Applicata, 223, 25–34.
go back to reference Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997b). Coping strategies: Evidence for cross-cultural differences? A preliminary study with the Italian version of coping orientations to problems experienced (COPE). Personality and Individual Differences, 23(6), 1025–1029. doi: 10.​1016/​S0191-8869(97)00112-8. CrossRef Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997b). Coping strategies: Evidence for cross-cultural differences? A preliminary study with the Italian version of coping orientations to problems experienced (COPE). Personality and Individual Differences, 23(6), 1025–1029. doi: 10.​1016/​S0191-8869(97)00112-8. CrossRef
go back to reference Tabolli, S., Pagliarello, C., Uras, C., Di Pietro, C., Zambruno, G., Castiglia, D., et al. (2010). Family burden in epidermolysis bullosa is high independent of disease type/subtype. Acta dermato-venereologica, 90(6), 607–611. doi: 10.​2340/​00015555-0947. PubMedCrossRef Tabolli, S., Pagliarello, C., Uras, C., Di Pietro, C., Zambruno, G., Castiglia, D., et al. (2010). Family burden in epidermolysis bullosa is high independent of disease type/subtype. Acta dermato-venereologica, 90(6), 607–611. doi: 10.​2340/​00015555-0947. PubMedCrossRef
Metagegevens
Titel
Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases
Auteurs
Rocco Luigi Picci
Francesco Oliva
Federica Trivelli
Claudio Carezana
Marco Zuffranieri
Luca Ostacoli
Pier Maria Furlan
Roberto Lala
Publicatiedatum
01-02-2015
Uitgeverij
Springer US
Gepubliceerd in
Journal of Child and Family Studies / Uitgave 2/2015
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI
https://doi.org/10.1007/s10826-013-9864-5

Andere artikelen Uitgave 2/2015

Journal of Child and Family Studies 2/2015 Naar de uitgave